Alexithymia, burden and resilience in ALS’ caregivers

Living with a progressively disease such as Amyotrophic lateral sclerosis (ALS) has a strong impact on the people affected and on their relatives, who have to tackle the demanding duties of caring for and assisting them (Tramonti et al., 2014). Many factors modulate the levels of burden in ALS’ caregivers: disease related factors, personality related factors, enviromental factors. Dennison et al (2001) showed that alexithymia could to contribute to increasing distress in ALS’ caregivers, but there are very few studies on this. Other studies supporting the role of resilience such as protective factor (Ripamonti, 2015). The aim of the study is to assess the relationship between alexithymia, resilience and burden in ALS’ caregivers. Methods: 30 ALS’caregivers were tested with the following instruments: TAS-20 (Bagby, Taylor, Parker, 1994), RS-15 (Wagnild e Young, 1993), CBI (Novak e Guest, 1989). Results: we showed a positive correlation between total alexithymia score (TAS20-Tot) and emotional burden (CBI-E; ρ=0.357, p<0.05), particularly between TAS-20 DIF and Emot-B (ρ=0.412, p<0.05) and between TAS-20-DDF and Emot-B (ρ=0.33, p<0.05). We showed negative correlation between RS-15 tot and Dev-B (ρ=0.375, p<0.05), Phys-B (ρ=0.362, p<0.05), Soc-B (ρ=0.442, p<0.05) and Emot-B (ρ=0.392 p<0.05). Conclusions: Our results in ALS’ caregivers confirm our ipothesis of a relationship between alexithymia and burden. Difficulty in identifying and describing own and others feelings could increase caregivers’emotional negative state and burden. It could lead to ineffective emotional responding and it could be a risk factor for care-related stress. On the contrary, however, the resilience, such as personality factor can to modulate the negative effects of distress and it is a protective factor safeguarding low-burdened caregivers. These results show that it is very important to identify the presence of alexithymix traits in order to improve quality of life in caregivers.